Wednesday, November 28, 2007

Happy Thanksgiving!

Katie and Jake bummed that there are no Thanksgiving drippings to fight over.

Our friends Karen and Sam visited for our first Thanksgiving breakfast.

This year we did something a little different which worked out marvelously. My original intent was to make a traditional thanksgiving dinner but that did not work out and it would have been too much work anyhow. My friend Karen suggested having a breakfast which was so much easier and really a pleasant way to start the day visiting with our friends.

We had pumpkin pancakes, chicken apple sausages, baked bartlet pears with apricots, raisens, and almonds, and hot spiced apple cider.

The night before I peeled all the pears to bake in the oven the next day, the sausages I just had to throw on the grilling machine, and the pancakes were easy to make. A half hour or less afterward my kitchen was clean and we were ready to head to Seattle.

I was actually feeling great that day and the weather was clear and sunny which was an added bonus.

This year we had decided to volunteer somewhere but we apparently did not plan far enough ahead. A week and a half before Thanksgiving I scoured the internet and local papers for an opportunity where we could contribute. Surprisingly, it was not as easy to find as I had anticipated. I assumed I would just open the paper to find an ad for volunteer opportunities for thanksgiving day or a master list on the web.

I did run across a Seattle Times article online that said you must reserve early for holiday volunteer activities as they fill up fast. With the article was a link to a few places needing volunteers. Not all of them happened on Thanksgiving and not all of them were close. I found one near us but when I got an email back to my inquiry they no longer needed help.

Another friend I asked had suggested the Union Gospel Mission in Seattle. When I checked out the website it mentioned they serve 3 meals a day 7 days a week. I thought they would surely need help and when I called I was pleased to learn from the intern on the line that they could use us.

So Harley and I were all excited. We were set to volunteer Thanksgiving afternoon at the women's and children's shelter. However, when we got there our names had not been added to the volunteer list! They did not need us. So we walked over the the men's shelter to see if we could chip in there.

When we arrived were many volunteers there also. We were given the task of waiting at the front door for any donations generous people dropped off. After sitting there for close to 2 hours there was only one group who dropped off things for us to help carry in. There was not any other tasks for us to do so we left and enjoyed that last bit of the nice day and setting sun over Elliot Bay.

It was interesting because after all this we had only eaten breakfast and a cheese stick. We did not stop at the open restaurants on the water front as we were in the mood to eat turkey instead of fish. We were sure there would be something open in Redmond so we waited to drive there even though we were famished.

Now here is a thing about gratitude and not fully being able to appreciate it until you are able to experience the other side. When we were down in Seattle we saw the homeless waiting to get out of the cold and enjoy a hot meal. They had no families and on Thanksgiving day they were waiting out on the street with their backpacks or bags of their only belongings. Some were young and some were old. One had to wonder about their lives and how they got there. One boy had to be 16 or 17, maybe even 15. He clearly was a run away. Wow! Can you imagine being a kid and not having a safe home and refuge to go?

So back to my story. I don't think there ever was a Thanksgiving day where I became that hungry. I always had things provided for me and I never witnessed what it was like for people who did not have that. I grew up in Upper Michigan so I never truly was exposed to homeless in the big city.

Like those waiting for a thanksgiving meal, we had to wait for whatever was available. When we got to Redmond (the closet town to our home) we were disappointed to find that none of the restaurants were open. We sure had our bellies set on the Claim Jumper which served turkey meals.

Of course by this time (6 pm or later at night) we were pretty hungry after only having breakfast and wanted something quick and convenient (although I have to say even though McDonald's was the only thing open we were not that desperately hungry). Fortunately Safeway was open where we were able to put together already prepared dishes and a hunk of precooked lunch meat turkey.

So even being hungry we were fortunate to have options: A)McDonald's B)An open grocery store and C) A warm and safe home stocked full of food we could prepare. We were able to afford food and had a shelter.

Experiencing it that way and seeing it that way, I would have to say it was one of the most meaningful thanksgiving's I have known.

Tuesday, November 20, 2007

Well This is Strange - Swollen Eyelids

Just when you think you are out of the woods you stumble upon a new forest. I awoke this morning looking like this and the swelling around my eyelids lasted all day. It has gone done a lot now but my upper eyelids are still slightly swollen. They were so swollen that I could feel the swelling.
Okay, what happened? Nobody knows. I woke up at 5:46 am needing to use the restroom (I went to bed at 2 am). An hour later I awoke to headache (bad dream again) and took two Excedrin. At 10:49 am I was surprised the wake up so late. I could not see too well out of my eyes but that is kind of normal as the gel drops I put in them at bedtime paste them shut.
I wandered into the bathroom to splash warm water on my eyes to unglue them and was surprised to look in the mirror to see the face in the picture above staring at me.
Ahh! What now? I brought the camera into Harley's office to have him snap these photos of me. Then I had a weakness episode where my legs quivered and body started to shake. My vision blacked out again like the head rushes I have been having. If Harley had not held onto me I might have fallen to the floor like I did in the episode in 2004.
Scary crap. I had to lie down right away and of course fear envaded my mind. I started to cry and get upset but then I had to remind myself that the strain of those activities would make the situation worse. So I chanted to myself the mantra from a motivational book I am currently reading, "Every day and in every way, I am getting better and better."
It is easy for fear to creep in and try to paralyze my mind. The last time the fainting/blacking out attack happened to me was when the tumor that was removed was swelling after the radiosurgery treatment in 2004. Thus I have fears of developing high intercranial pressure which leads to papilledema (swelling of my optic nerves). I have been on medicine for papilledema for over 2 years. Now I am off of it (3 weeks now) to see if removal of the tumor relieved the papilledema. Left untreated, papilledema will eventually result in blindness. So you can understand why I would get a little freaked out.
The 0ther time I had these weakness/fainting episodes is right before I was diagnosed with cancer. I had a blood cancer so I was very anemic which was causing the fatigue and fainting/weakness spells.
Boy, what a wonderful selection of things on my mind, eh? It truly is a struggle at times like these to keep thoughts positive and optimistic.
I emailed the doctors and one responded not knowing what is going on. He said the swelling could be related to an allergy or medicine I am taking.
a) I am no longer taking medication and have not been for 3 weeks. I did start taking an iron supplement (slow FE) 2 days ago and this morning I took Excedrin. However, both of those I have taken in the past and do not recall this happening.
b) I did not eat anything different or use any different kind of soap or bodyspray.
So who knows? Not knowing or having an answer is unsettling.
So what do I do? I start ruling things out.
At my first follow-up appointment my low blood counts alarmed me but I had just had a surgery so maybe that is kind of normal. I had a repeat done as in the back of my mind blood counts out of whack could mean something bigger is happening. The results of the second blood draw also showed low red blood cell count and hemoglobin (anemia) but I had some peace of mind seeing that my white blood counts were normal and not abnormally high. I don't feel like I did when I had cancer either except for lethargic and mildly weak from the anemia.
When I had the onset of papilledema I had other visual issues occur which have not been happening (light flashes and double vision). Realizing that has given me a little more sense of relief to keep me from total panic.
I did a quick search on swollen eyes and of course came up with papilledema and brain tumors (mine being one of the rare causes of this swelling). High intercranial pressure and others were also listed as causes. However, the tumor is out and swelling occurs immediately afterward and not delayed like in the case of radiosurgery (radiation).
I further searched on the same site under "swelling eyelids" which brought me to the heading "leg weakness and puffy eyes" which is what happened today. Under "weakness" I was brought to "anemia". So it appears that the head rush spells are related to my iron deficiency.
I still don't know why my eyes puffed up. They are a little sore. Maybe I have developed a new allergy to something.

Monday, November 19, 2007

Friday's Appointment

Friday we headed down to Portland for my second follow-up appointment at OHSU. Everything looked well .

Things I can do:

  • public pool - yes the incision is healed
  • running - yes, gradually
  • weight training - yes, gradual increase of weights
scuba - wait until looking at 3 month post-op MRI; I would like to return to diving in the spring.

standing on my head - yes, for 10 minutes a day.

LOL, sorry I had to throw a little humor in there! ;o) I am just joking about standing on my head of course. They do perform that in yoga but I don't do it as I would probably break my neck before passing out! LOL

Problems I have been having:

Hand writing is very difficult. Reason - The tumors were located in the area of the brain that controls fine motor skills. That area of the brain needed to be retracted (lifted up) to access them. As a result, there could be swelling of that part of the brain which causes weakness in certain muscle coordination. As the swelling decreases the coordination of my right (writing hand) will improve over time.

I have noticed a difference from first coming home. I could even sense it the first time I did dishes as scrubbing food off a pot/pan was not very efficientt. When I first came home it was also VERY difficult to document my progress. Writing was EXTREMELY slow! I was glad to have typing ability which surprisingly (and still is) better and faster than handwriting (I am a crappy typist: maybe 25 to 30 words per minute or less on an ergonomic keyboard). I do notice some improvement writing when doing upper arm weight lifting.

Blinking of the right eye is delayed and does not close fully (results in drying out and irritation of the eye); This should improve with time as the inflamation of the nerve decreases.

The tumor was also on the nerve that controls sensation so my taste should also improve over time.

Head rushes - should not be related to the surgery. I am still anemic. Now that I recall, I also experienced the head rush/vision blackening many years ago when I was anemic. I am not a steak eater so I really do not consume any red meat. I am a white meat kind of gal (poultry, seafood, and pork). Therefore, I am back on Slow FE (iron) which I took about a year ago when my hemoglobin and oxygen carrying blood counts were low.

I have really felt low on energy over the past week and working out is much harder than before. My muscles fatigue easily and I am physically tired also. I thought this was primarily from the steroids wearing off and not working out regularly for 2 months. I am relieved to have a better explanation then just thinking I was totally getting out of shape fast.

With my taste change I have stopped drinking V8 and eating bananas unfortunately which are very high in potassium. I have been having aching shin pain in my right leg at night which is probably related to my low potassium level and not the blood clot I had previously as that results in a different kind of pain. So I am taking the potassium supplements again which I stopped using when I went off the Diamox medication (Diamox depletes the body of potassium so I had to take supplements and eat high potassium foods to prevent lower leg muscle cramping).

Pain behind left eye and involuntary muscle spasm of the lower left eye lid - not sure what is going on there. The pain behind my left eye has seemed to go away within the past few days. We will make a note of these things to watch and take a look at the next MRI coming up.

It is possible to have another surgery right after a previous one if needed. However, my surgeon does not want to operate on that tumor at this time. It is smaller than the two I had removed. It is not big enough yet to warrant a surgery. These tumors are not removed unless they are producing problematic symptoms or growing to a large size.

Now that may seem a little confusing for some reading this as they have had tumors removed that were small or smaller. Remember I am completely deaf. Thus hearing preservation which some pursue when operating on smaller tumors is not an issue for me.

We will continue to monitor this tumor through MRIs like the others. My last MRI was in September (prior was April). The next one is in a few weeks. It is routine to do the MRI 3 months post surgery after the swelling has gone done. After that, as long as I am not having a problem, the MRI schedule will return to every 6 months again.

Other interesting tidbit -

Between my ear and the incision my scalp is numb. I can tap it and it does not feel like I am tapping my head. From making the incision some sensory nerves are cut and sacrificed. The feeling may come back or the lack of sensation may be permanent.

Things I was finally able to take care of that I could not or did not have time to do before the surgery -

Get a haircut/trim

Get my last dental cleaning for the year (when it was due I had the onset of trigeminal neuralgia)

Katie and Jake also got to have their bath today at Petco. :o) They were all excited to be clean and not stinky. Now they will go roll around in the dirt again! LOL ;o)

Friday, November 16, 2007

Update on Tastes

I am still eating the green tea wasabi peanuts. They have totally become my favorite thing now! I snack on them several times a day (just a few as I cannot swallow too many due to dry mouth; I have to drink water while eating them).

Sweet things are not sitting too well with me yet depending on what it is. Last Saturday we went out to dinner at Chili's with my sister and DJ and I ordered the Caribbean Grilled chicken salad which I did not find satisfying at all. It sounded good (topped with pineapple and mandarins with a lime vinegarette). That is the thing...sometimes food looks good from my memory of it but then the taste is another story.

I tried to eat the chicken off of it and the lettuce with no dressing. Yet the chicken was too dry for me to swallow. Later I switched with my sister as she had the asian lettuce wraps. LOL It was as if I went from eating pure sugar to pure salt! Thank goodness we had a bag of wasabi peanuts in the car for afterward!

I found a something which I totally enjoy and can eat! Apples are a no no for me with my facial paralysis. I have a hard time taking bites out of the apple and not chewing my lip. However, I find that I can still have apples by eating apple sauce or slices. Normally granny smith or green apples are too tart for my taste. Yet, I do enjoy them on salad sparingly and bought a bag of Chiquita green apple slices the other day. This evening I decided to try one and ended up eating nearly the whole bag they were so fantastic!

So that is my new thing - Green Apple Slices

The other night I had vegetarian pizza from Papa Murphies with tomato sauce that agreed with me. Dark chocolate fortunately is something else that I am still able to savor.

Thursday, November 15, 2007

Optic Nerves and Status of the Eyes

Photo to the right
Papilledema Secondary to Intracranial Tumor
Bilateral,fellow eye: the signs of disc swelling are less pronounced. Moderate blurring of the disc margin is associated with moderate hyperemia, venous dilation, and coarsening of the peripapillary nerve fiber layer. This case demonstrates asymmetric papilledema.
Stephen C. Pollock, M.D., Durham, NC, USA
Above: View of optic disc and nerve of my right eye
Below: View of optic disc and nerve of my left eye
I cannot fully explain this to you yet as I am still researching it myself to understand what I am looking at. I have yet to find a photo of a normal eye. I am finding lots of photos of glaucoma patients as it is a disorder where intraocular pressure is increased damaging the optic nerves. That is why I take the same medication as glaucoma patients (Diamox to reduce intraocular pressure).
The papilledema (optic nerve swelling) is still a mystery of NF2 which another person in the country and a patient from Australia and I are investigating. So far, we have found out that the tumors are releasing proteins into the cerebral spinal fluid and increasing the intercranial pressure. Two other patients with this problem have had lumbar punctures to try to alleviate the papilledema. I have not. I have been on Diamox for two years to reduce this swelling. From what I have been told, the tumor which was removed could have been pressing on the 4th ventricle of the brainstem creating blockage of the cerebral spinal fluid and thus increasing the pressure. Now that the tumor which was the source of compression is removed, I am trying a trial off of the medication to see if the papilledema returns.
SIGH......... It is frustrating to not have answers and to have my eyesight hanging in the balance. Not cool seeing as my sight is CRUCIAL to my functioning. These complications with vision were totally not anticipated at all seeing as I do not have optic tumors. Hence, I never bothered to research it over all these years and my field of study is not in ophthalmalogy or even human anatomy on this scale.
As part of having NF2, research to understand my disorder and make treatment decisions have become a big priority of my life. Fortunately, I have the science background to grasp all of this and the study aptitude. I also have the experience of going through a serious medical situation at a young age (cancer at 21 while I was a college student) and realize the importance of keeping track and being responsible for my own health care.
I have been thinking over the past year of obtaining a detailed and thorough anatomy book of the brain. My current library has only basic biology books as my area of study was not human anatomy (instead zoology, marine biology, and geology). Also this evening, I was thinking it would be good to add a book about eyes to the collection. All this knowledge is important to my understanding of what is happening to me and what course of action to take. As the saying goes "Give a man a fish, he eats for a day. Teach a man to fish, he eats for life."
Status on the eyes so far-
Tuesday November 6th was my last ophthmalogy appointment. Apparently I was supposed to have it next week but the schedulers made it for last week intead of next week. The idea was to have a checkup after I have been off the medication 3 weeks. Instead it was 1 week off of the medication so really we do not have a clear picture if the papilledema is resolved. (I did not know this until we showed up.) The photos above were taken last week. The doctor said my optic nerves are stable but are showing scarring from the papilledema. Yet when the photographer took the photos he said it is showing optic nerve swelling. So who knows until I see a different ophthmalogist down in Portland next month.
It was still good I had the appointment as I was having extreme irritation in my right eye. It was like having an annoying hair or object in my eye or having pink eye. It was hard not to rub when it itched and burned and was blurry. It was really bothersome as it would all of a sudden flare up when I was driving. I could not close the eye for relief as I cannot keep the opposite eye open. Thus I had to blink super fast to keep from driving off the road blind and hope for the best that it would go away. Obviously that is a huge problem.
At the appointment I was told not to rub the eye. Well what the H do you do? Isn't it natural instinct to rub your eye if your vision is blurry and irritated like there is a particle in it? Do you just sit there and let the irritation eat at you and not be able to see? HELLO?
After insisting that it be checked out and pushing for a way to get relief as opposed to just "Don't rub the eye.", I got the answer that my eye is drying out and there is a slight dryness of the cornea that needs to heal. I am not blinking the eye consistenly with the other one and closing it fully due to the facial paralysis on the right. My current drops (Refresh artificial tears) were not enough lubrication for the eye. I needed something thicker in consistency but the gel drops which I use at night are too viscous that they distort my vision (like looking through water). When we saw the photo guy we got some samples of Refresh Celluvisc and Optive. I asked for a contact lens patch from the photo guy and finally the doctor provided the reason why not to rub my eye and why I could not have the patch. First, the contact lens patch can trap bacteria underneath the lens and prevent the epitheal cells from healing. Constant rubbing of the eye further aggravates cornea (such as scratching a cut).
The Optive drops have been very successful and I have not had the terrible irritation. I am not experiencing double vision or light flashes but I am having momentary blacking one would experience when having a head rush. This seems to happen when I wake up, when I stand from a sitting or resting position, and when bending over. I had an occurance today while walking when I stopped to tie my shoe. For seconds everything goes black like night and then it clears and I can see normally again.
Other issues to note:
Pain behind my left eye and involuntary facial spasms of the lower left eye lid (the side where I have the other tumor still)

Monday, November 12, 2007

Redmond Ridge Trail

Kari's Bog

Photos from fall 2006 at Kari's Bog on Redmond Ridge Trail.
This evening we took a stroll on Redmond Ridge which we have not visited since prior to surgery. I like this trail as it goes into the woods along the Trilogy golf course and feels like an enchanting forest with its tall hemlocks, mossy covered trees and stumps, and bushy ferns everywhere. (Lord of the Rings ambienence)
It is tradition to often stop and see Kari's Bog. Karen Ingrid Osterhaug was born the same year I was but passed away in 2003. As it says on the dedication stone above, she was an evironmental scientist instrumental in creating the bog. Knowing that moves me and makes it a more special place - that someone committed their life to creating a refuge to share and pass on to humanity. The fact that we were the same age and shared similiar interests also make me feel more connected to this place.
Every time I see the bog it reminds me of times I enjoyed in the outdoors of upper Michigan and playing in the wetlands (swamps). When I look across the bog I half consciously expect to see or envision a moose as I had witnessed in the UP (upper penninsula of Michigan).
There is a quiet peace and contemplation at the bog. It is a place where I can stop, peer into the grandeur of the sky and reflect upon my life. Like entering a church, it is a place where I can stop, pay tribute, ask God for strength, and to be thankful for what I have.
As I looked across the bog this evening the magnitute of everything started to hit me. If I had known 10 or 20 years ago that I was going to have a brain surgery, it would have been hard to comprehend. For those of us with NF2 it becomes a normal part of life (almost a rite of passage). But outside of life with NF2, the idea is hard to grasp.
For a moment I put myself back in the frame of thought outside of NF2. I felt amazed and overcome to have made it through and be standing there alive as I had prior to the surgery. I made it! I had these aliens cut out of my head and I lived! A tear of sheer happiness and appreciation for life welled up in my eye. I thanked God for carrying me through it and I thanked Kari for providing me the place to come to during my journey.
Then I came back to my NF2 life. I wondered how many more surgeries I would endure and how many more I would live through. If I can make it through one I can make it through another. I prayed to God and to Kari to give me the strength and the courage for what lie ahead.

Training has begun

Photos by Laura Cunningham at the top of the Columbia Tower in Seattle (Big Climb for Leukemia 2006 participant)
Training has commenced.
On September 30th after I returned home from the surgery I made the goal that I was going to climb the Columbia Tower in Seattle again this coming March. A "Save the Date" postcard came in the mail while I was in the hospital. Harley picked up our mail the day after we came home and Sunday when thumbing through it, finding the post card became the inspiration of a recovery goal for me to work toward. I posted it up on my computer armoire where I see it every morning.
While in the hospital, stairs were rather terrifying. I believe I finally attempted them under guidance of the physical therapists on the 3rd or 4th day. Going up was not too bad but going down was REALLY scary as I had double vision and was weak. I joked with the therapists on whether I could climb the tower again.
When I came home stairs were not an option as there are stairs needed to climb to get into the house. Then eventually I had to brave the stairs inside the house to get up to my computer and bedroom and then down to the garage and spare room full of excess stuff.
It does not take long to climb the tower. Last March I climbed it somewhere between 15-16 minutes. What it does take though is cardiovascular endurance and leg strength. My leg endurance had becomed conditioned from training to walk the Seattle marathon last November. In January I started a different kind of training by working on my cardiovascular endurance by running and using the Cybex machine. I had not quite gotten used to using the revolving stair master machine.
So far since the surgery I have been to the gym 4 or 5 times. Within the last week I have been there twice and used the revolving stair machine. I found I have to hang on so I don't fall off (It embarassingly happened to me a couple times before surgery.) The first time I was able to climb 69 floors in just over 18 minutes. Yesterday (Sunday) I c0mpleted the 69 floors in 16 minutes and 27 seconds. I have only gone for 20 minutes. It is quite a workout and I am pretty exhausted afterward (huffing and puffing with profuse sweating).
Today I took a break from the gym as I was a little sore in the upper body (I did a chest routine and leg routine on the weights yesterday too). I find that for now, I am only going to the gym once a week. This week I will try for 2 times maybe 3 if it is going really good. Prior to surgery I was able to go about 4-5 days a week and also do my walk or a run for the day.
I also have added my hill routine (Daniel's Ranch neighborhood). I walk up and down the hill twice during the hour jaunt. One day I skipped the cul de sacs of the route and hammered out 3 traverses of the hill. I do the walk there once a week.
Oh, exciting news. On the way down the hill last week I found it easier to jog than to walk. It is the first time I have been able to jog since before the surgery. This friday I go to my second followup visit in Portland. I will ask if it is okay for me to start running now.
My fundraising page is soon to come! Information about the Big Climb can be found at this link:
To see photos of the tower and to learn the details about it, click the lighthouse icon in the post title for the link and to be directed to that page.

Tuesday, November 06, 2007

More of my Little Halloween Cuties

Pictures taken October 31, 2007 our walk in Issaquah, WA. Katie is pictured on the left and Jake on the right.

Happy Belated Halloween and Fall!


Me, my sister Michelle,
our sister-in-law Denise

Pictures were taken at my birthday celebration on September 22nd (2 days before the surgery). hehe I could not find where in the computer these photos were saved until now....hence the delayed posting. :o)

Monday, November 05, 2007

The Incision

Stock photo of a brain. The grayish brown portion is the cerebellum. The brainstem is the small portion you see sticking out underneath the cerebellum. The large tumor (vestibular schwannoma) was compressing the brainstem (lodged between the brainstem and cerebullum) while the other tumor (meningioma) was abutted up against the larger one.
Relative size of the tumors: vestibular schwannoma - 3.4 cm
meningioma - 2.5 or 2.8 cm

Photo taken October 4th, 2007 (first week home after surgery). Click the lighthouse link in the post title above to see a diagram of this surgical procedure: Subocciptial Craniectomy via Retrosigmoid Approach Here is a picture of the incision so you can see how large of an area they had to drill in order to reach the tumors. The incision is in the shape of a C behind my ear. From what Harley told me, it had to be this large so they could lift my cerebellum (the back part of the brain) in order to access the 2 tumors near my brainstem.

Originally my mom told me the stitches were brown. I later came to learn that the dried blood on my scalp made them appear that way when in fact they were translucent white like fishing line. Two and a half weeks after surgery Harley had picked a couple of these pieces off that were sticking out of my head. The stitches are dissolvable so they sloughed right off.

The surgeon's report of the procedure is absolutely amazing! It is very technical however, so I will provide a description in layman's terms.
First I was placed in a position known as "prone" which is face down like getting a massage. For this procedure I was arranged at "three quarters prone" (which means I was partially upward and not lying completely flat on my stomach). After removing the bone and lifting the cerebellum, a microscope was inserted underneath that identified the first tumor which was gray in color. Biopsies confirmed it to be a meningioma. An instrument called a Cavitron was used to debulk and remove this tumor. Then a yellowish tumor next to it was identified as the vestibular schwannoma. The surgeon carefully dissected this tumor on its edges and identified the 9th, 10th, and 11th cranial nerves. Then he continued to dissect it by debulking it from the center and carefully dissecting it from the cerebella portion of the brain and brainstem. Also, the compression of the tumor on the trigeminal nerve had caused my symptoms of trigeminal neuralgia prior to the surgery. Thus, this area was also dissected and decompressed (pressure relieved through removal). The part of the tumor which had grown into the IAC: inter auditory canal was also removed.

Facial nerve electrodes had been placed on my face to stimulate and monitor the facial nerve. Seeing as I had experienced facial weakness from the previous radiosurgery to this tumor, the small portion of tumor around the facial nerve was left to prevent further damage.

Closing me up
The mastoid air cells were waxed, and titanium mesh and Norian bone cement used to seal the opening. Once the cement hardened, the temporalis muscle and scalp were put back in place and the incision sewn shut.

It is pretty healed by now. I have been wearing a baseball hat without a problem for a few weeks now while taking my walks. It has been itchy and I have tried not to scratch in but I think I might have in my sleep. I am pretty certain it is all healed and that next week maybe I can get a long over due haircut (trim) and hopefully dye it sometime soon. In another week I believe I will be able to return to water aerobics, go in the hot tub, and take a bath. The concern prior of doing those activities was exposure to infection.

An interesting thing to note -
The area between my ear and the incision is numb but the incision area itself is sensitive to touch.
On the area of my neck extending below my ear, I feel some bumps. This would be scar tissue that I am wondering if it will go away in time. It is a little irritating as at first touch I forget what it is and want to itch it off like some kind of bug bite or zit.

The Wellness Table - Thank You :o)

Above is what I call my "Wellness Table". In the kitchen we moved the table all the way against the wall and set a nice cheery cloth on it with dried hydrageas from our yard. The vase the hydrageas are in is a very special gift from my sister with the saying "Beauty Can Be Found in Diversity" by the poet Maya Angelo. The idea was to have things clean and positive for when I returned. Upon return home, we setup all the cards and flowers on this table which greeted me each morning with a reminder of your support and good vibes for recovery.
While in the hospital and after, I recieved many nice surprises of flowers, balloons and cards. I would like to extend a special thank you to those of you who were so thoughtful to send them! Your kindness means the world to me and your sentiments have been incredibly uplifting! As a patient I have come to realize just how important this kind of support is in keeping a positive outlook on recovery. I was very elated each time I opened a card and a special delivery was made!
The flowers really brightened my hospital room and were a joy to see each day. One bouquet had very aromatic roses that permeated the room and reminded me of my lovely visit to the Portland rose garden the day before surgery. Again, thank you so much! The balloons in my room brought extra cheer to being there and the yellow happy face balloons gave me a sunny outlook.
I am the sentimental type. I have taken photos of all the flowers which I plan to put in a scrapbook with all the cards. The book will be titled the "NF2 Odyssey" after my blog and journey through Neurofibromatosis.
Now I just have to find some creative artsy scrapbook people to help me make it. Any takers? ;o)
Also, a special thanks I would also like to extend to friends and family that helped us clean, get ready and also brought over food before and after surgery. We truly appreciate your generosity! :o)

Strange Tastes

My taste has changed greatly from the steroids making it so I cannot eat many things and Italian tomato sauce dishes contribute to the bad taste and nausea. I have not eaten Italian cuisine in weeks. Oddly enough, although some dishes are too spicy, I find myself able to eat things like wasabi on imitation california rolls, wasabi peanuts, and artichoke jalapeno dip or jalapeno hummus.

At the worst phase (2 weeks ago), my mouth tasted like I had been sucking on a burned metal pipe. I found myself tasting many things to get the flat icky metallic flavor out of my mouth! Many foods had a bad after taste that made the problem worse.

Since being nauseated lately, I find it difficult to find meals to eat which I would enjoy. There will be food in the fridge that I just do not feel like eating and thus I have to force myself to eat something. It is an oddity. I get more nauseous with an empty stomach. Therefore, I have to eat regularly.

Aside from my new love of wasabi peanuts, I find great comfort in Dreyer's brand Orange Cream Sherbert. I eat it everyday and if I had no sense I would eat it for every meal! It has the effect on me like a security blanket. When I was in the hospital orange sherbet was the first thing I was able to keep down. The cool smooth texture and mild taste of the ice cream was so relieving and still is! When nauseous it feels better to eat cold things rather than hot.

Comfort foods I find that I can eat:
  • cold pumpkin pie
  • cottage cheese
  • strawberry kiwi jello
  • roast chicken with gravy
  • roast turkey with gravy
  • roast pork with gravy
  • mashed potatoes
  • canned green beans
  • soups such as clam chowder or beef vegetable

Seas still a little rocky but calming

The weekend was tough but yesterday evening I started to feel better where I actually accomplished a few things. This morning (just after 8 am) I was nauseated again which interestingly I am getting relief by eating green tea wasabi peanuts which is a new snack at Costco. After eating a couple wasabi peanuts which have become my morning breakfast routine, I ate a cup of cottage cheese and went back to bed with a cold cloth on my swollen eyes.

A few hours later I was dreaming of being in a doctor's office to investigate my current symptoms. I awoke to another frontal headache which was not as severe as the others and was remedied with acetmetiphin.

I am doing well enough today that I am planning on driving to the trail in Carnation and taking a walk with the dogs. They are pretty bummed out that we did not go all weekend and have been moping around. (If you know me well, you know that I really must have not been feeling good at all to have not even went outside let alone for a walk.)

I am looking forward to gaining my strength and for recovery to be on the upswing from here on out! It is time to get back my life.

Friday, November 02, 2007

Rough Seas

This week is not going so well. Today I am just wishing I could vomit and get it over with as I have been going through a few days of increasing nausea as if sea sick or car sick. I despise this feeling so much that it has the effect on me like the cringing reflex one may experience when hearing scratching nails on a chalkboard.

The mornings have not been a pleasant awakening. My dreams have responded to my bodily reactions. Wednesday morning I had a combination of bad dreams. First I dreamt that I took an advanced science class that inv0lved complicated calculations. I was completely lost and nothing that was discussed could be found in the book. The contents of the book were as obscure to me as if I were looking at a book written in a foreign language that I did not know. What was worse is that I had an hour or two to study (cram) for the final exam when I didn't know a darn thing. I felt utterly hopeless and panicked. In the dream I knew there was not even a chance to attain one point out of hundred. In my dream the pain in my head intensified with my stress.

Then to top it off, the dream shifted to being thrown out of a helicopter into the icy English Channel. The water was rough and pieces of ice were floating around. I had a life preserver but the people who pushed me out and jumped with me wanted to take it off. I pleaded that in the rough deep water if I went under or closed my eyes, I would not be able to swim and drown.

At that point I awoke to a screaming headache and chills even though I had a down comforter on me. It was a catch 22. Even though I felt really lousy, continuing to lie down was exacerbating my headache.

So it has been like this for the past few days: constant headaches and constant nausea with episodes of the chills. Yesterday I noticed my eyes swelled up and my face sort of puffy. This morning is even more extreme. Both mornings I have rested with a cold rag on them which does not seem to be reducing the swelling around my eyes.

Today is rainy and cloudy. I may take a break today from walking. I really did not feel like it but I did force myself to get out and do it the rest of the week. Tuesday I just could n0t say no to the dogs. They peaked in the window when it was time to let me know they were ready. Of course my heart when soft and I was like "OK. Let me go get ready." Yesterday Harley took us to the dog park and Jake was so excited he started to jump in circles on the deck while I got ready. Then Katie actually ran up the ramp into the truck which she does not do. They thought I was not going to take them because they knew I was not feeling well.

I am kicking myself as the last few days have been really nice and I have been inside all day sick. I accomplished absolutely nothing yesterday and the house is turning into a cyclone. I am trying to motivate myself to do some cleaning and putting things away today (I am still working on that).

As far as the walks, the fresh cool air feels a little better and walking it out is part of the healing process. I was slower yesterday (worst I have felt since in the hospital...I have no idea how I got through that) but managed to walk twice around Marymoor dog park.

Yes. I am missing things today.

  • My friend Skip's fundraising breakfast for the Team in Training with the Leukemia and Lymphoma society

  • Our monthly ALDA meeting

  • The Leukemia and Lymphoma Pineapple Classic

That is kind of bite. It is not like I had nothing to do today or no options. I just hope this does not last long so that I am not out of commission the rest of the month.

Next weekend is the Turkey Trot (a fun run that I will not be ready for yet) and the Wild Turkey Scavenger Hunt (which I do want to do) which are fundraiser events for the local school district's Health and Wellness program.